We have two children who were born with cystic fibrosis. It is that pesky disease where the salt doesn’t regulate properly in the body causing mucus to stick in the body. It coats their lungs and can get really thick and sticky making it hard to breathe and easy for germs to build up and cause sickness. It isn’t only about the lungs it affects their whole body. They need to have enzymes (giant pills) before each meal and snack; even before drinking milk! Their pancreas is covered in mucus which doesn’t allow the natural enzymes to be released.
Now enough about the medical side of CF. What I wanted to write about is how it affects our kids and our family. Our two “cfers”, as they are called online for convenience, are now 4 and 5 years old. They go through a lot of medical interventions each day to try and keep their CF from landing them in the hospital. Each morning we do “air treatments” which are medicines that they breathe in through a nebulizer with a mask. This usually takes 20 minutes per child; longer if they are sick and have extra medicines. When they start a cough we ramp up treatments to every 4 hours. You can imagine how tiring that can be for the kids and also for us as caregivers who sit with them and do manual chest therapy. It can be up to 2 hours of treatment time per child per day. Thankfully we have some older children who do help out once in a while and do a treatment for us. Generally, it is my hubby and I who sit with them and watch crazy videos online, read books, colour and play toys with them while we pound their chest and back to help them to cough out the mucus.
All of our children are fully aware of how this disease works, and how to keep our two healthy. Everyone has taken on the job of making sure they get their enzyme before they eat. We all know the rules and what happens if they don’t get their pills. We all carry extra enzymes in our purses, bags and on our keychains! All of our kids can hear when they start to rattle or cough a new sound. Our oldest daughters know how to hook up our 5 year old to her pump which puts high calorie drink into her stomach all through the night. Our kids know to add salt to their food and they all spend time with them in hospital when they are admitted and they help with “Mom” duties when I am with the kids in hospital. They have learned to help with air treatments and learned about diligence when they see we never miss a treatment. Our kids are amazing. They have learned to be helpers and care for their siblings.
We have learned so much from this disease. The most important things we have learned as a family from this disease can be summed up in four points.
1. Family is LOVE. We all take responsibility for making sure the kids are as healthy as any of us. We daily see our other children showing love to the two with higher medical needs. Our other children have learned empathy, caring, and more medical knowledge than some health professionals regarding CF. Everyone has their own issues. One of our daughters has ADHD and has her own set of adjustments that the family needs to make. CF is just another adjustment just like a learning disability. We gladly make those adjustments because we love them.
2. Everyone is different yet the same. Everyone is unique. Our Cfers have some needs that are different from ours. They need to eat high fat, high protein, high salt diets and take pills before they do. I can’t eat pork or wheat the rest of the family can. My hubby has high cholesterol and has a special diet. My daughter has IBS and can’t eat a lot of things. We all seem to have different needs but we make sure everyone has the foods they need that will keep them healthy. Everyone has different understanding, different ideas and different processes. We learn to help each child wherever they are at. In as many ways we are different we are also the same. We are all human. NO matter the colour of our skin, girl or boy, or the disease or ailments that afflict us we are the same. In the photo below I have two babies. One has a disease the other a severe food allergy. Can you tell which is which? Both are babies, both are adorable, both are cuddly and need hugs and kisses. Both will have to take care of what goes into their bodies. Both are loved the same.
3. We are all dying. Yup, it’s a fact! We are not promised a life of 100 years. A fact no one likes to think about but from the time we are born we start aging and heading on a path towards death. So morbid yet true. I am always amazed when people ask how it feels to know our children are dying. I rebut with so are yours they could be hit by a car tomorrow! None of us are guaranteed tomorrow. It affects our way of thinking when you see life this way. We tend to make the best of every day. We try to do as much as we can because none of us knows how many days we have. Our kids could grow old and live to 100 or they could die tomorrow just like anyone else. No one knows. So we do our best to try and stay as healthy as possible so we can have as many days as we can. They may be struck with pneumonia and not see their 20th birthday but we will do as much as we can with them and help them to live a full and productive life while they are living.
4. Two are better than one! So many people work very hard to make sure they only ever have one child with cystic fibrosis. I don’t know who better can relate to someone with CF better than another cfer. Problem is they are not supposed to be within 6 feet of someone else with CF. People with CF can carry bacteria in their lungs that won’t affect you or I but can infect other cfers. When siblings are born with it they live under the same roof growing up and will grow the same germs and usually get the same illnesses. Because they must stay away from other cfers, they can’t go to CF camps or CF support groups. Their only support from others who truly understand is online groups. Our siblings end up in hospital together, staying home sick from school together and will be each other’s best support. Is it harder and more work having two with cystic fibrosis? Definitely, but it is manageable and we are already equipped to manage it. We are so thankful they have each other. I want to encourage other parents who are struggling with the decision whether or not to have more children if you have one challenging one already. It will be harder. Adding another child is ALWAYS more work. Adding another child is ALWAYS more blessings, more fun, more siblings and more love.
When you think about it, Cystic Fibrosis taught us all of this!